Abstract
BackgroundPalliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care.MethodsData from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences.ResultsThe framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being ‘actively treated’, and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to.ConclusionsOur framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.
Highlights
Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke
Guidance is built on the premise that stroke teams can recognise patients who may benefit from palliative care; staff have the necessary training in the principles and practice of palliative care to support dying patients; and that access to specialist palliative care expertise is available [5]
This paper addresses this gap by investigating the integration of palliative care into the acute stroke pathway
Summary
Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. Published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. The evidence-base for palliative care within a stroke context is limited: recommendations focus exclusively on end of life, and draw mostly on research completed in cancer populations. These may only partly be transferable to a stroke context. This paper addresses this gap by investigating the integration of palliative care into the acute stroke pathway
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